The beginning, and why we go : A look back at to February 2003, trip to Bamako
A Travelogue by Annie De Groot, M.D.
Dr. Annie De Groot and her associate Julie McMurry traveled to Bamako, Mali in January in 2003 to visit an AIDS vaccine clinical trial site. In 2002, Dr. De Groot received a three year $2.7 M grant from the National Institutes of Health to develop a new AIDS vaccine that is based on pieces of protein derived from multiple strains of HIV, whereas most AIDS vaccines are developed from single strains of HIV. Dr. De Groot’s vaccine, the GAIA vaccine, is specifically designed to prevent AIDS in regions of the world that are most affected by the HIV pandemic.
This post commemorates that voyage and explains why the GAIA vaccine has been declared a not-for-profit initiative by the groups involved in developing the vaccine (EpiVax, and GAIA Vaccine Foundation). Eventually, the GAIA vaccine will be available at no additional (profit-related) cost to people in developing countries. Thus the vaccine is not only designed to be globally relevant; it is being developed to be globally accessible.
Dr. De Groot has been able to partner studies of the vaccine in Africa with a group of Malian researchers, the doctors Koita, Dao, Diallo and many others. Her rationale for evaluating Mali as the first place to test this vaccine is that the prevalence of HIV in that country is still fairly low, by comparison to other African countries, and the scientific infrastructure in the country is excellent (even though the average income is no more than $300 per year).
The two facts that remain uppermost in our mind are that 90% of HIV is being transmitted in Africa and that 90% of Africans are not (yet) infected by HIV. A vaccine to protect Africans, that will be relevant to the type of HIV being transmitted, and accessible because of very low cost, is desperately needed.
Dr. De Groot and her team at GAIA Vaccine Foundation (including current director Eliza Squibb and Mali Director Karamoko Tounkara) continue to work towards that goal. The purpose of her visit in January was to meet her collaborators in Mali and to lay the groundwork for future trials of the GAIA vaccine in Bamako. The following paragraphs describe her trip.
Providence Jan 5
I am keeping Mali in the front of my mind. Running along the river early Sunday morning, I look at the great expanse of water, the snow and the green grass coming up through the snow. On my way home, I look at the toys and household objects (wooden pinocchios, lamps, and chairs) that are out at the curb waiting for Monday trash pickup. I look at the many Christmas packages ripped open, emptied, and recycled at the curb. Standing in the shower, savoring the act of letting the water run and run and run, I think about parched, dry, dusty Mali. Picking up the paper, going out for coffee, stopping at the store, I see so many aspects of life here in Providence that I will be living differently in just a few days.
Paris Jan 6
We fly from Boston to Paris and from there to Bamako in West Africa. Crossing over the security barrier in Paris to the departure lounge, Africa becomes irrevocable. We find that there is – truly– no going back. The security man shakes his head, smiles, and shrugs and says the only way to return to Paris is arrive from another country. We are on our way.
Indeed, when we turn to look at our surroundings, we have already left Europe, as if the concrete barriers and metal detectors were a portal to that larger, warmer continent. The gathering crowd at the gate, waiting for our thrice-delayed flight to Bamako, is already forming a line. Mothers and marabouts, new children and new wives, newly successful businessmen, they are all returning home. For them, this departure is a celebration: everyone is beautifully dressed in layers of cloth, or wearing the latest skintight jeans and stiletto heels. The few Europeans in the departure lounge look out of place already. They are pink, rumpled, and anxious.
Like a great wave of strangeness, we and our fellow travelers move from gate to gate as our departure is delayed again, and moved, and delayed. We are patient, we know what it is to wait. If we have been to Africa, or we are African, we know from experience that the paper ticket we brought with us has almost no value on this side of the concrete barriers – that our only hope of getting on the plane is our physical presence at the front, or in the middle of the line. For those at the back, the future is uncertain. Everyone is relieved when the plane finally begins to board.
Flying Jan 7
My seat is at the very back of the plane. I pick my way over packages, feet, children in the aisles. More packages arrive- at least two in the hands of each new arrival. There is no room to move. On the plane beside me, there is a man wearing his blue sleeping mask over his mouth, like a surgeon. (I see this many times, later, in Bamako. The Air France eyemasks recycle and are resold as masks to filter exhaust fumes to motorcyclists and bicyclists in the city). Mid-flight, my neighbor begins to dismantle the ceiling light, because he cannot figure out how to turn it off. I show him, and his neighbor, and then his neighbor, how to use the controls on the seat.
Bamako Jan 8
The heat and dryness of the Sahel hit as soon as the doors are opened, along with the smoke and smell of many cooking fires. We descend steep staircases from the plane, which appears to be an alien presence in this dark and smoky place, standing huge and white, far above the ground. We struggle slowly through the passport check – only two officials for a full plane. Inside, the luggage cycles and cycles on the baggage belt, which appears to be made of great fans of old leather, torn and frayed at the edges from years of use. Huge metal crates, giant suitcases and boxes bound in tape and twine appear, circle, and are trapped and dragged away by porters. Our luggage does not arrive. It is 4 AM.
Hospital Jan 9
In the AIDS ward this morning, a patient died while we were standing near her, talking. The ward nurse covered her with a blanket and we still stood, talking over her body as it lay like a bundle of twigs in the bed. I could hear her sister crying, outside. With the other ear I could hear my physician colleague telling me about the tests that were done to try to discover the cause of this woman’s illness. A CT scan. A Chest X-ray. Treatment with “tri-therapy” which is what they call the AIDS cocktail here. To no avail. She was dead, here, this morning, as we stood there. Tears are shed. Nothing can be done.
Another one will come to take her place. The doctor at the ward tells us “while we do not wish for death, we have only 15 beds for the 100,000 AIDS patients in Mali.” There is a waiting list. If one patient goes home, or another dies, the patients on the list are contacted and invited to come to the ward, if they are still alive. I ask – how do you determine which one should be treated first – since they are all so sick as to require admission to the hospital? Another doctor replies – we take them from the top of the list.
The face of AIDS in Mali
Who are these patients? I meet a military man. I meet a legislator. I meet a young man who sells used cars. No one has any CD4 T cells when they arrive – the AIDS virus in their blood has already destroyed these. Some of the counts are as low as 2, or 4 (the normal being more than 500), because they do not come for treatment until the end. These patients first go to traditional healers, then they go to the local infirmaries, and then they come here get wait-listed for a bed. But for every two that die, one survives. Medication can be had – for a price. Every test, every pill is paid for by the patients’ family, in cash. A Chest X-Ray costs five dollars. A CT scan cost 100. Treatment for cryptococcal meningitis (a common fungal infection of the brain) can be had, sometimes, and must be paid for by the family– at the cost of $2 per pill – more than the average daily wage – but sometimes there is no drug available anywhere –not in the pharmacies and not on the black market, and nothing can be done.
Later, these same doctors are stunned when I tell them that most of the AIDS wards in my country have closed- for lack of patients. I tell them I treat almost all of my patients as outpatients – even the ones they see as hopeless, we have seen live for years after their T cells reached the abyss. What is the difference? Access to care.
What is the barrier to care? Nothing any more complicated than lack of funds. Consider this – if the patient has no money, he or she may be eligible for antiretroviral drugs after consideration by a committee. Once approved, the patient must match the government’s expenditure of 4,500 Malian francs for one month’s supply of “tri-therapy”. 4,500 francs is less than 8 dollars, but the average income here is 25 dollars per month. A patient must choose food or treatment. For most there is no possible choice, because they are not chosen to receive the limited supply of medication available through the government, because they are “too sick” or “not sick enough”. Therapy can be prescribed directly to the patient, outside of the government protocol, but it costs $300 per month – the average yearly salary. There are very few who can afford that price.
My friend Aida of USAID Mali, who can be wise and funny and sad about AIDS because she has been doing this work in Africa for 10 years, is convinced that they mix beauty products in AIDS drugs. This is because, she says, everyone taking them looks so beautiful. She says that you can tell from the faces of the people in the HIV support group in Bamako who can pay for the drugs and who cannot. I try to imagine what it is like to watch friends die for lack of treatment, while knowing that treatment is available but just out of reach.
The doctors say that most patients will take the treatment after getting sick, but after only a few months they have spent all of the money that can be found in their family, and they say they have to stop. The doctors then give them Bactrim (to prevent some of the complications of AIDS) which is distributed for free, when it is available. The free supplies of Bactrim also run out. Bactrim costs only pennies a day, why is there not enough?
The math and the aftermath
There are 100,000 persons living with HIV in Mali. Of those, how many are treated? Only a handful. Aida estimates 150 at Hopital Point G up on the hill where we are staying, another 200-300 in town at the Hopital Gabriel Toure, and 100 at CESAC. Without knowing how the T cell counts are distributed, it is difficult to know whether the number of people being treated is anywhere close to the right number – most would only require treatment if their T cells were lower than 250. If we assume that people are evenly distributed in each quintile below the normal T cell count of approximately 500, then at least 4,000 should be receiving treatment (100,000 / 5 x two quintiles lower than 200). Why does this matter? Because the government only planned to treat 200 patients and set aside exactly enough funds to do so. They never realized how much demand for treatment there might be. (And why should we be surprised? Who would refuse a treatment that recreates beauty, that gives hope, that prolongs life?) More than 600 patients are now under treatment in the government program and so – supplies run out.
Isn’t this cause for concern? Of course this is cause for concern! Supplies run out, treatment is interrupted, HIV becomes resistant. Then, not only do the drugs fail to work, but also the chance of transmitting resistant virus is high. I cannot imagine the impact of cycles of interrupted therapy citywide, repeated over time. This approach to treatment will create HIV resistance that will be country wide, and interruption of supplies is wide spread as I suspect it is, in all of Africa. HIV resistance will mean that no drug will work, even if they become accessible.
Having been there a few days, I realize that my greatest concern about Mali is that there is no countrywide plan in place to treat HIV infected pregnant women. There are more and more of them, according to figures not yet released by USAID – in some regions of the country, the number of pregnant women who test positive for the virus is 5%. While this infection rate is no where near the disastrous rate seen in Botswana, or South Africa, must we wait? The epidemic is spreading most rapidly among women of reproductive age. At what point do we reach the level of outrage? Why not now?
There is no plan to treat women who are pregnant and infected with HIV. There is no plan and therefore pregnant mothers are not routinely receiving therapy. This is the simplest intervention and it is also morally imperative. The chance of HIV transmission from mother to child can be reduced to near zero by pre-emptive treatment with anti-AIDS drugs. I am told – meetings have been held. More meetings are planned. I ask again and again how many more children will be born to die? Combien d’enfants seront nés pour mourir? No one had an answer. Nevirapine, the medication that is given to prevent mother to child transmission, costs a few dollars for the one pre-delivery dose that is given. Is there no concern about the future of Mali? Who will carry the country forward if both the children and their mothers die?
Market Jan 10
We go to market because that is where the life, the blood, the heart of Bamako resides. We step carefully because the street is passageway, garbage dump and sewer. First we change money – we are sent by a front man to a barren courtyard behind his store. A man is washing his feet before praying in the courtyard. In an alcove, there are two benches and a balance for weighing gold. We greet our bankers and make our exchange. As we leave, several people are sharing their lunch out of a bowl on the ground. We are ghosts, we pass into these lives and out as quickly as we came.
We return to the bright street – I wear sunglasses so as to be able to take it all in – brightly colored plastic sandals and baskets, shiny aluminum pots, prayer mats, teakettles, beads and baubles, cloth and perfumes, and umbrellas and good strong rope and bicycle tires and toothbrushes. There are young girls carrying blue buckets of cold drinks on their heads. There are small women carrying piles of hand-dyed cloth. There are old women sitting on the side of the street with their pile of four oranges, each four oranges forming a small pyramid. There are shops on the sides of the passage that are full of cans (of what) and metal objects (scissors, ladles, fans) and all kinds of essentials. There are stores stacked to the rafters with incense and perfume, where baskets of bits of sticks, white crystals, amber colored pebbles sit on the counter and the floor. (These are added to the braziers inside the home to perfume the air). There is a crowd that flows around us and over us and jostles us to the side. The market is Wal-Mart with no walls. Everything can be found somewhere in these narrow streets. This is the Bazaar, the Marché, and the place to find all of Africa. My nose is filled with smells and my eyes are filled with colors. I am in heaven.
Running Jan 11
Point G (where our guesthouse is located) is set high on a hill above Bamako. I use running as an excuse to tour a nearby village on the ridge. The houses are made of mud brick. The roofs are made of tin. None are bigger than my small garage at home, most are smaller. Small children, chickens and goats scatter at my approach. Women look up from their washing and wonder. Boys laugh behind their hands.
I run along a footpath on the hill. From there I can see the whole city. I can see cows going to pasture, picking their way up the rutted roads and maneuvering around the cars going in the opposite direction. I see kraals on the edge of the city where the sheep must wait on their way to the butcher. I see heaps of scrap and piles of junk and I hear the rhythmic banging of many hammers on metal – an autobody repair shop? An iron worker’s shop? I cannot tell. I see the clustered tin awnings of the nearby Marché Médin and hear the voices of the crowd – even from here since there are so few cars, it is the sound of the crowd that floats up the hill from Bamako that I will remember.
I will also remember the garbage that is everywhere on the sides of the road. It cannot be shut out or ignored. This is picked over, minimalist garbage. There is no food in it – the goats have eaten that. There are no toys – that is certain. There are only plastic bags, and broken things, things beyond repair. These garbage dumps are everywhere people gather – at the edge of the market, at the edge of a village, at the edge of our hospital. There are also open sewers in the city. The children shit at the curb. Red dust is everywhere. The roads are in complete disrepair.
And yet there is beauty and joy. There is lilting music (kora and singing) spilling out of every shop and home. The women move beautifully in their long skirts made of cloth with brightly colored repeating patterns of hens and eggs, or heating coils, or appliance plugs, teapots and tea cups, fans, intertwining electric cords, perfume bottles and crowns. Talk is free, and there is much of that – discourse between vendor and customer, discussion between taxicab and truck, animated and joyous. Women breastfeed at the curb, two children, both breasts and shoulders bare.
Returning Jan 12
It will be well past midnight, when the Air France plane leaves Bamako. Ousmane, my colleague in the HIV/TB project, gives me a ride to the plane. We give my friend Saloumata a lift to a place near her house, leaving her at the stop along the way to the airport. There are no streetlights, it is dark and dusty, but there are many people waiting at the road’s margin that is unmarked in the clay. I get out to say farewell. She has never been to America, but hopes to go someday. There is no telling when she will go. I leave her there in Bamako, on the clay, in the dust and the dark. I am going to the United States but I will return to Bamako again and again.
Why do we go?
We go to change the balance, to bring us closer, to extend a hand. We go to push better care and compassion. We go to insist that pregnant mothers get treated for HIV, so that their children will not be born to die. We go to battle complacency. We go to build the foundation of collaborations that will help bring the GAIA vaccine to Mali.
We also go to bear witness, to knit our countries together, to ask our neighbors in Rhode Island (some of whom financed the GAIA visit to Bamako in January) to help us bring about change. Working together we can ask the hard questions, we can join hands, we can fight AIDS.
I returned to Providence thinking about the recycled, picked over, layer of trash lining the streets in Bamako, about the AIDS drugs that we have and they do not. I wonder how it is that the gulf has become so wide. Are our worlds so far apart because of the great expanse of ocean between us? How do you and I end up on this side and they on theirs? Whatever the reason, ours is not to ask. All we are given is the will to bring about change. That is why we go.
Epilogue
GAIA Vaccine Foundation has been working to end AIDS in Mali, alongside HIV/AIDS Clinicians, NGOs, and the Malian Government, since 2003. For more about our ongoing efforts, go to www.GAIAvaccine.org.